Originally Posted by Natalie8

I got my results online in their system (which is pretty cool by the way--you can track and graph multiple tests results). I called and left the nurse a message and she didn't return my call. Ergh!!! I wanted to know what the next step was and to ask about the Ty. infusion on Mon. But no response. My urine test results are in the MS clinic's system already since I went to their lab.

Cheryl This will really get you going...the infusion nurse does not ask questions before I get the Ty. I was shocked. I get Ty. in an infusion room with 4 chairs inside the MS clinic. When I went the first time I asked him why he didn't ask me the questions. He said, well I can read your chart and see that you don't have anything serious going on and I know all the answers to the question are "no." The problem is, what if you get treatment by your primary care doc. or someone else and that info doesn't get faxed to the MS clinic? Or any other strange scenario. I'm getting ready to write a letter to the director of the clinic to complain about this lapse in protocol (you know who the director is) and explain how it doesn't reassure me or give me trust in the treatment I am receiving while on Tysabri. I see a psychologist that works with MS patients. She told me that some of her patients have complained about the nurse not asking questions either. This is seriously bad, right?

RW Thanks for reminding me that I shouldn't take chances with my health and the infusion and that it's no big deal being a few days late if something needs to be resolved. Because this is something I would totally worry about!! All of this is still new to me--the diagnosis, the symptoms/infections you can have with MS, and being on Ty. I guess you learn as you go along in terms of taking care of yourself properly and not beating yourself up too much. And yes, you don't realize how big a deal Peeing is, until you're having problems!!

Nurse Nancy Yes, I will follow up about this. I'm pretty sure it was a UTI since my urine was extremely cloudy for awhile. I had some bladder test done at the Mayo Clinic 9 months ago and it didn't show any problems that would be MS related (but who knows, you can always develop new stuff, right?)

Can I just whine a little though??! UTI's are so uncomfortable!

Part of my problem is I've only had the MS diagnosis for 14 months. I think I am still in that hypervigilance state where you focus on every little thing -- it's "oh my god, something is going on in my body, is it MS related, is it something else, will it ever go away, what does it mean, am I just imagining it? blah blah blah). I'm trying to be zen but feeling a bit anxious. I don't think learning about that new PML case yesterday helped any.